The FDA has approved only three drugs – Cymbalta, Lyrica and Savella — for the treatment of fibromyalgia. Although they generate billions of dollars in annual sales for Pfizer, Eli Lilly, Forest Laboratories and other drug makers, most who have tried the medications say they don’t work.

The National Institutes of Health estimates that 5 million Americans suffer from fibromyalgia, a poorly understood disorder characterized by deep tissue pain, fatigue, headaches, depression, and lack of sleep. There is no known cure and the disorder is difficult to treat.

“Fibromyalgia is devastating for those who must live in its grip. There is much we do not understand. We need innovative ‘out of the box’ solutions that change the face of this disease,” said Dan Bennett, MD, an interventional spine and pain surgical physician in Denver, Colorado, who is chairman of the National Pain Foundation.

Many who responded to the survey said they had tried all three FDA approved drugs.

“The prescriptions that are available for treatment have more negative side effects than positive aspects,” said one fibromyalgia sufferer.

“I haven’t found anything! Please find a cure or at least a medicine that will take our pain away,” said another.

Asked to rate the effectiveness of Eli Lilly’s Cymbalta (Duloxetine), 60% of those who tried the drug said it did not work for them. Only 8% said it was very effective and 32% said it helps a little.

Among those who tried Pfizer’s Lyrica (Pregabalin), 61% said it did not work at all. Only 10% said it was very effective and 29% said it helps a little.

Asked to rate the effectiveness of Forest Laboratories’ Savella (Milnacipran), 68% of those who said they tried the drug said it didn’t work. Only 10% said it was very effective and 22% said it helps a little.

About 70% of the people who responded to the survey said they had not tried medical marijuana – which is not surprising given that it is still illegal in most states and many countries. But those who have tried marijuana said it was far more effective than any of the FDA-approved drugs.

Sixty-two percent who have tried cannabis said it was very effective at treating their fibromyalgia symptoms. Another 33% said it helped a little and only 5% said it did not help at all.

“I’ve found nothing that has worked for me, apart from marijuana,” said one survey respondent.

“Nothing but medical marijuana has made the greatest dent in the pain and mental problems,” said another.

“Marijuana does help a LOT it numbs the pain. But it doesn’t last long and it makes your brain foggy,” wrote another fibromyalgia sufferer.

Survey respondents said massage, swimming, acupuncture, muscle relaxers and other alternative treatments also helped relieve their symptoms. Many said they take opioids to relieve their pain – although narcotic painkillers are generally not prescribed to treat fibromyalgia.

Other survey findings:

Four out of ten (43%) fibromyalgia sufferers feel their physician is not knowledgeable about the disorder.

Over a third (35%) feel their physician does not take their fibromyalgia seriously.

45% feel their family and friends do not take their fibromyalgia seriously.

Nearly half (49%) said their fibromyalgia symptoms began at a relatively young age (18-34).

Only 11% were diagnosed with fibromyalgia within the first year of symptoms.

44% said it took five or more years before they were diagnosed with fibromyalgia.

Many survey respondents lamented that the disorder had taken over their lives, leaving them socially isolated, fatigued and in constant pain.

“I was once an active person and have now virtually become a hermit due to this disease,” said one.

“The worst thing about having fibromyalgia is disappointing loved ones when I can’t do things with them,” wrote one fibromyalgia sufferer.

“Having fibromyalgia is a life sentence. One simply cannot have a productive life living with this disease,” said another.

The 1,339 people who participated in the survey were self-selected as fibromyalgia sufferers. Ninety-six percent of them were female.

This was the second online survey of pain patients conducted by the National Pain Foundation and National Pain Report. The first survey found that over half of patients worry that they are perceived as “drug addicts” by pharmacists. Eight out of ten said they had stopped seeing a doctor because they felt they were treated poorly.